The long goodbye, part 2: ‘I fought so hard, but I can’t take it anymore’

Devin Franklin orders supper for his half-sister Misty and their father Ken (not in picture) from Misty’s room at the CapitalCare Norwood. Misty became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003.Greg Southam
/ Edmonton Journal

For quadriplegic Misty Franklin, leaving her room at CapitalCare Norwood is a long process — she has to hire an extra nurse, her ventilator is moved to a battery pack, she has to bring her medication, and she likes to get dressed into something nice — which can be exhausting. It means that sometimes, like on this trip to the Royal Alexandra Hospital for a hamburger, she ends up falling asleep during the trip.Greg Southam
/ Edmonton Journal

Misty Franklin, a woman who became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003, now lives in CapitalCare Norwood. Misty has decided she wants to come off her ventilator and end her life.Greg Southam
/ Edmonton Journal

Misty Franklin, a woman who became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003, now lives in CapitalCare Norwood in Edmonton. She has decided she wants to be removed from her ventilator, and end her life.Greg Southam
/ Edmonton Journal

Trevor Fontaine, the man who stabbed Misty Franklin in the neck, leaving her paralyzed, had a long history of violence, particularly with women. Here he is shown in a CrimeStoppers photo from 1992.SUPPLIED

Trevor Fontaine, the man who stabbed Misty Franklin in the neck, leaving her paralyzed, had a long history of violence, particularly with women. Here he is shown in a page from the Winnipeg Free Press in 1992, profiling CrimeStoppers’ 10 most wanted criminals in that city. He is in the top row, centre.SUPPLIED

Misty Franklin’s daughter Shianne rubs cream on Misty’s arm as the pair prepare to go out to celebrate Misty’s 34th birthday on Sept. 28, 2013. Misty became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003.Greg Southam
/ Edmonton Journal

Misty Franklin visits with her half-brother Devin Franklin and their father Ken in her room at CapitalCare Norwood. Misty became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003.Greg Southam
/ Edmonton Journal

Quadriplegic Misty Franklin has had a tombstone made for herself, as well as a bench to hold her ashes. The tombstone has a place for a picture of Misty with her two daughters. She plans to be cremated, and then buried in Grande Prairie.Greg Southam
/ Edmonton Journal

Misty Franklin’s daughter Shianne helps her with her makeup as the pair prepare to go out to celebrate Misty’s 34th birthday on Sept. 28, 2013. Misty became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003.Greg Southam
/ Edmonton Journal

Misty Franklin’s daughter Shianne shows her a picture on her phone as the pair prepare to go out to celebrate Misty’s 34th birthday on Sept. 28, 2013. Misty became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003.Greg Southam
/ Edmonton Journal

For quadriplegic Misty Franklin, leaving her room at CapitalCare Norwood is a long process — she has to hire an extra nurse, her ventilator is moved to a battery pack, she has to bring her medication, and she likes to get dressed into something nice — which can be exhausting. It means that sometimes, like on this trip to the Royal Alexandra Hospital for a hamburger, she ends up falling asleep during the trip.Greg Southam
/ Edmonton Journal

Massage therapist Fay Pytel understands why Misty Franklin wants to come off her ventilator and end her life. ‘The fact that she’s a quadriplegic and can feel all the pain,’ she said. ‘Most can’t.’Greg Southam
/ Edmonton Journal

Misty Franklin and her daughter, Shianne, before Misty was stabbed in 2003.SUPPLIED
/ Submitted

Misty Franklin’s daughter Shianne helps her with her makeup as the pair prepare to go out to celebrate Misty’s 34th birthday on Sept. 28, 2013. Misty became a quadriplegic after being stabbed in the neck by a boyfriend in December 2003.Greg Southam
/ Edmonton Journal

Quadriplegic Misty Franklin comes back to her room at CapitalCare Norwood with caregiver Kay DaSilva after going to the Royal Alexandra Hospital for a hamburger. Trips outside the complex are exhausting, and often, Misty ends up falling asleep instead of being able to enjoy them.Greg Southam
/ Edmonton Journal

Massage therapist Fay Pytel understands why Misty Franklin wants to come off her ventilator and end her life. ‘The fact that she’s a quadriplegic and can feel all the pain,’ she said. ‘Most can’t.’Greg Southam
/ Edmonton Journal

First published Dec. 7, 2013.

This is the second part of a story about Misty Franklin, a woman who was paralyzed in a violent attack 10 years ago, and who now wants to die. Read the first part here.

EDMONTON - In the dream, Misty Franklin is in a big, empty house. She can hear his heavy breath and smell the smoke from his cigarette. She can feel the disgust at having him close, the terror of running and hiding but never getting away.

She has had the same nightmare almost every night for 10 years. Sometimes it has felt as though they’ve lasted all night, one of the tortures she’s been left with after Trevor Fontaine stabbed her in the neck on Dec. 18, 2003, and made her a quadriplegic.

Earlier this year, nearly a decade after Trevor left her for dead, Misty decided she wanted to be removed from her ventilator. She chose Oct. 30, 2013, as the day she would die.

Trevor grew up in Manitoba, a ward of the government on and off from the age of four. Prison documents describe a childhood of neglect, violence, and allegations of sexual abuse by his mother and another relative. In some of his programming while in custody, Trevor recorded thoughts like “I’ll make them pay — I hate them — Why me — They deserve this.”

Though he faced a steady stream of charges for robberies and other violent crimes from the time he was a teenager, Trevor’s most serious violence was reserved for women he was dating. He often raped and choked his girlfriends, sometimes holding knives to their throats. He burned one of his girlfriends with cigarettes and lighter fluid. He bit another woman on the face. One woman he was dating nearly died after he choked her, beat her with a frying pan, and then stabbed her in the back, leaving her bleeding on the kitchen floor of a rundown house in Winnipeg.

He choked another woman so hard during a sexual assault that he crushed her voice box, leaving her permanently unable to speak above a low whisper. For years afterward, the woman still wore pants to bed and she woke up most mornings at 4:50 a.m., the time he attacked her.

Photo: Trevor Fontaine, shown in this photo from CrimeStoppers in Winnipeg in 1992.

He was on parole for the sexual assault and attempted murder of that woman when he met Misty in the fall of 2003.

Given his extreme history of domestic violence, Trevor had been ordered to report any relationships with women, and parole officer Gordon England met with the couple in October. Though things seemed fine on the surface, England had a gut feeling something wasn’t right. He had planned to meet with Misty and do a further assessment of the relationship, but he was seriously hurt in a car accident. His cases were passed along to other parole officers, and the assessment was never done.

As Trevor’s behaviour at the halfway house where he was living continued to deteriorate, another parole officer told Misty and Trevor they had to take a “time out.” She told Misty that Trevor had a history of violence in relationships, but couldn’t give her the details or tell her the extent of the violence. After she was hurt, Misty sometimes thought about what she would have done differently if she’d known.

“I said, ‘Is he bad?’ I was asking a lot of questions but they weren’t answering them,” she said. “If they would have said that this man had hurt other women like he did, I would have run the other way so fast.”

Misty would later file a lawsuit against the Correctional Service of Canada, the National Parole Board and several other government agencies.

In June 2006, a jury found Trevor guilty of 10 charges for the attack on Misty, including aggravated assault, assault with a weapon and unlawful confinement for preventing her cousin and her cousin’s children from leaving the house.

Misty testified against Trevor and was in court for part of his trial, sitting stiffly across the room in her wheelchair, trying to meet his eyes.

At first, he wouldn’t look at her, and would yawn or stare at the floor. One day, finally, he looked up. Misty was sure she could see the sadness in his eyes, and she was proud she’d been able to face him. She felt like it made her stronger.

“An abused woman has to realize she’s the winner,” she told a reporter covering her case. “She should be thinking, ‘I’m here and you’re the one that’s belittled.’”

With the new convictions and his lengthy record, the Crown sought to have Trevor declared a dangerous offender, the most severe sentence in Canadian law.

Thirty-seven witnesses testified at his sentencing hearing, including four of his victims. The women all asked to testify behind a screen so they wouldn’t have to look at him.

He was declared a dangerous offender in the summer of 2008 and sentenced to an indefinite term in prison. He came up for parole in 2011 and again in March 2013 but the parole board denied his release both times, saying in a written decision that he’d been assessed as being “in the early stages” of managing his anger and dealing with his emotional issues.

Misty sometimes imagined what it would be like to face Trevor again. She felt like she’d forgiven him, mostly because the anger she felt toward him for so long had become a burden. The only thing she really wanted to ask him was: “Why?”

In the summer of 2013, Misty’s 16-year-old daughter, Shianne Gullackson, Googled his name. She thought a lot about the man who had hurt her mother, and she wanted to see if she could find out where he was. She knew she probably wouldn’t be able to do anything even if she did find him, but she liked to imagine different things she could do to him if he ever got out.

“I have a lot of anger in me about him,” Shianne said.

For most of the summer of 2013, Misty was in so much pain she couldn’t get dressed. It hurt too much to have people touching and moving her and putting on her clothes.

Everything she did was a struggle. If she wanted to talk, a respiratory therapist had to adjust the amount of air flowing through her tracheotomy cuff. When the cuff was inflated, Misty got the most air, but couldn’t speak. When the cuff was deflated, she could talk but got less breath.

If Misty fell asleep talking, as she often did, her ventilator alarm would go off, warning she was not getting enough air. Sometimes the beeping woke her and she’d tell the ventilator to shut up. Most often she wouldn’t hear it, and a respiratory therapist would have to come and adjust the cuff again, giving her air, but taking her voice.

She even lost the slight, subtle movement she’d briefly gained in one hand. It was almost nothing, barely more than a twitch, but for Misty it was significant, and losing it felt like another blow.

“I fought so hard,” she said one day, her voice squeaking out as she tried to talk through an inflated cuff. “I’m doing my best, but I just can’t take it anymore. As a mom, as a woman, as a person who has just tried to get through the years.”

---

Photo: Massage therapist Fay Pytel understands why Misty Franklin wants to come off her ventilator and end her life. The fact that she’s a quadriplegic and can feel all the pain, she said. Most can’t.

Fay Pytel, a massage therapist and former nurse who saw Misty every week, understood why she wanted to come off the ventilator. Having worked for 20 years with quadriplegics, paraplegics, amputees and people with serious brain injuries, Fay knew the reality of Misty’s existence. She shook her head when she looked at how curled Misty’s fingers were, how bad her “foot drop” had become, because it was too painful to wear the splints that kept the muscles and tendons from contracting.

She thought Misty was one of the saddest cases she’d ever seen.

“The fact that she’s a quadriplegic and can feel all the pain,” Fay said. “Most can’t.”

Being removed from a ventilator is a legal right in Canada, having been won in the 1992 court case of Nancy B., a 25-year-old Quebec woman who was paralyzed and on a ventilator because of Guillain-Barré syndrome.

Dalhousie University professor Jocelyn Downie, an expert on end-of-life issues in Canada, said people can choose to be removed from a ventilator as long as they are older than 18, have the mental capacity to make a free and informed decision, and understand what will happen once the ventilation is removed.

“It’s generally considered to be a battle waged a long time ago,” said Downie, who holds a research chair in health law and policy.

She said people have a right to refuse ventilation just as they have the right to decline surgery, dialysis or cancer treatment, or refuse blood transfusions for religious reasons, or even decline antibiotics for pneumonia.

Downie cited one study that showed about 90 per cent of critically ill patients in Canada die after the removal of some form of life-support. “People are withdrawn from ventilators all the time,” she said. “Maybe people don’t realize how much it happens, but it’s common.”

Neither the medical ethicist nor the doctor working with Misty would speak about the specifics of her case, even with her written consent.

When Misty picked Oct. 30, 2013, as the day she would die, she felt happy and relieved. She got annoyed when people seemed to doubt her.

“People keep questioning me. They keep saying, ‘Are you sure, Misty? Are you sure this is what you want?’ But it’s never changed,” she said one afternoon. “I’m very certain. My mind hasn’t changed for six months.”

Misty decided she wanted to be cremated, and had a bench made to hold her ashes. When it was done, she was excited. It had been expensive but it was exactly what she wanted, and she imagined it at the cemetery in Grande Prairie. “Somebody better come sit their ass on this bench or I’m gonna be mad,” she joked.

In September, Misty’s daughters spent her 34th birthday with her — the first time they’d been together on her birthday since she was hurt. She loved having them with her, marvelling at their beauty and energy.

After that, the weeks passed in a blur. She slept much of the time and when she was awake, she was often drowsy or confused. She had a fight with her caregiver Kay DaSilva and was angry with staff at the care home, and days passed that she couldn’t remember at all.

"Who wants to know the day they are supposed to die, and then all of a sudden that day comes?"

In the middle of October, she realized that the day she expected to die was just weeks away.

She’d long been adamant that she was ready to die, but suddenly it felt like time was going by too quickly. There were still things she wanted to do. She wanted to go to the rodeo, and maybe take her daughters to Jasper. She felt like she needed more time. Saying goodbye was harder than she thought, and she was scared.

“I want to come off my vent. I screamed at them that I wanted a date, I just didn’t expect it to be so fast,” she said.

One afternoon, she asked for a text to be sent to the medical ethicist she’d been working with.

“I’m a little worried about how fast things are going,” she dictated. “At first it’s going too slow, now it’s going ultra fast.”

She didn’t want to die.

On the morning of Oct. 30, Misty woke up crying. She knew she wasn’t going to come off the ventilator that day, but its arrival rattled her nonetheless. She’d hired a nurse to sit with her overnight because she didn’t want to be alone.

“Who wants to know the day they are supposed to die, and then all of a sudden that day comes?” she said, after she was bathed and dressed that morning. “Today was supposed to be the day. There’s mixed emotions, like I’m going through a hurricane and I just about made it home.”

A tear ran down her cheek as she spoke. She couldn’t wipe it away.

“It’s the worst feeling you can imagine,” she said.

She spent the next few days in bed because of a growing sore on her back, sleeping and crying.

The next week, Misty went to the rodeo. Two nurses went with her, steering her chair through the crowds.

Even after 10 years, she wasn’t used to having people look at her like she was some poor soul, and she hated how people ushered their kids away from her so they wouldn’t stare. She remembered the days she used to wear tight, low-cut jeans and a cowboy hat, and flirt with all the cowboys. This time, the nurse tried to help her pick out a hat to buy but none of them would fit on her wheelchair.

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Photo: Misty Franklin visits with her half-brother Devin Franklin and their father Ken in her room at CapitalCare Norwood.

Misty’s father, Ken Franklin, came to visit the next week. He sat beside Misty’s bed making small talk, shaking her arm to keep her awake. Every few minutes her eyes would close, and she’d be asleep again.

“When I come here, I understand why she wants to do it,” Ken said, sitting in the hallway outside her room later. “She wants me to say it’s right. I can’t say it’s right, but I guess it’s what she wishes. It’s not me lying in that bed.”

A nurse came out of the room and stopped for a moment to look at two pictures hung beside the door of Misty before she was hurt.

“That’s her?” the nurse said. “She was so pretty.”

Christmas decorations are up in the hallways of CapitalCare Norwood, lines of garland strung between the patients’ rooms, and carols drifting from a stereo in the dining room. This year, Misty and her daughter Shianne will spend Christmas together for the first time since Misty was hurt. They will probably spend the day in Misty’s room. They have no plans but to be together.

What will happen after that is unclear. Misty says she still wants to come off the ventilator, and is more sure than ever that she’s ready to die.

Photo: Quadriplegic Misty Franklin has had a tombstone made for herself, as well as a bench to hold her ashes. The tombstone has a place for a picture of Misty with her two daughters. She plans to be cremated, and then buried in Grande Prairie.

Shianne said she didn’t think her mom would do it in October. Shianne wasn’t ready to let go then, either.

But in the past few weeks, that has changed.

“I’ve been thinking about it, and I think it’s best for her to do it now because of how long she has been in pain for,” the 16-year-old said. “She’s helped me a lot and I don’t know what I’ll do without her, but not everything is about me.

“I don’t want to see her go. Obviously, I would do anything for her to stay. But I think it is the best for her.”

She told her mom, “It’s OK now.”

Outside Misty’s window, the trees are heavy with snow, the sky grey and pale.

Her tombstone is black marble, etched with flowers, and a place for a picture of Misty with her daughters, the three of them together and smiling. Her epitaph reads: “She once grew and lived as naturally as horses running free through wild sunflowers.”

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